Karen was 10 when she suffered her first epileptic seizure and it was shortly after that she was diagnosed with generalized epilepsy.
On 7 September 2008, I received a call that no parent could imagine or should receive; my 26 year old daughter had been found dead in her apartment.
The cause of death was SUDEP; something I had never heard of. Like most parents in my position I wondered if I had done enough. What could I have done differently?
Although Karen had up to 15 seizures a day, she was a very independent young lady, who never asked for any support and she lived her life to the full despite her condition.
On clearing out her apartment I found a diary with a wish list where Karen had written that she wanted a seizure alert dog. Although this may not have saved her life, it would have made an amazing difference to her life. My guilt was immense, but not understanding what had happened was the worst thing. I never imagined that she could die so suddenly; I had no idea of the risks associated with epilepsy.
I found it hard to admit that I needed some support – someone who may help me to understand and answer some of the questions that were eating away at me. Talking to SUDEP Action (working name of Epilepsy Bereaved) helped me and I began to realise that maybe I could channel my grief into something positive; it was too late for Karen but maybe I could do something that would change things for others.
It was then that I began to write the play ’Karen’s Wishes’. Our story is so much like many others and I wanted to share it with as many people as possible. I knew it was a massive task but, with the help of some amazing people, I wrote a play which told the story of a dad whose daughter had died from epilepsy.
I was very fortunate that, through my work, I was acquainted with people who could help me write the script and produce the show.
I knew that 'Karen’s Wishes' was an important story and one that should be seen by all. When it was shown at the Mayfair Theatre in the West End of London in November 2010, it was a sell-out; I never imagined that it would be such a success.
Since Karen’s death the family and I have been involved in lots of activities to raise awareness of what happened to her and the three people who die each day from epilepsy in the UK.
Global Conversation 2011